[Stellatum]

Not sure how to describe it. I fall from the waist up only (my legs are relatively stable, so they remain standing). This isn't my usual "controlled collapse" routine where I settle gracefully to the floor. The top half of me just suddenly falls forward when I'm walking or standing up. I am trying to figure out which muscles are causing this to happen. My best guess is lower back?

If anyone else has these truncal weaknesses, I highly recommend a rollator (rolling walker with a seat) to stabilize the upper half of your body.

I wish all of you a peaceful and merry Christmas.

Abby

[AnnieB3]

Abby, Has anyone ever imaged your hip area? What about your spine and/or brain? Don't assume it's the MG, though it could be.

Yeah, I have core weakness. You can strengthen those muscles, even with MG. I would highly suggest an experienced PT to help you though. My neuro has PT's in their office who understand NM diseases. That really helps. We worked together to figure out what would work for me.

When you described this new weakness, it reminded me of a puppet when they are flopped over. MG is a wicked puppet master. Hope you find a way to make it better.

Annie

[Stellatum]

Annie, yes, I had CT scans (or MRIs--now I can't remember which. It may have been both) looking for demyelination before I got my diagnosis of MG.

I don't know how typical this is of MG, but for me the weakness travels around. My neck and the muscles in my sides are stronger (I'm no longer tilting from side to side) these days. But I'm having more trouble with my legs. Often I can walk unless some little thing throws me off balance, and then instead of compensating, I end up on the floor. I mean if I step on a wrinkle in a rug or something like that--the smallest thing. I don't fall, and I haven't hurt myself even though I collapse a dozen times a day, because I go down slowly into a squatting position. Then I have to sit and rest before standing up. The kids sometimes bring me pillows, and once, memorably, one of them simply stepped over me. They're used to seeing me down there, I guess. But it's definitely time for the IVIG, and thanks for posting the link to the Sub-Q Immune Globulin. How interesting! I'll ask my neuro about it.

Abby